November 30, 2009

I am spending the bulk of the day at the hospital today, getting my monthly zometa infusion and a bone scan. Here's how today will play out --

11:00 AM Place topical anesthetic Emla cream over port site, cover with plastic tagaderm patch and drive to hospital. Run errands along the way. Park in the pay lot because this will be a longer than usual time at the hospital and I might not find 4-hour free street parking.

12:00 PM Show up at Ambulatory Infusion Center (AIC) to have my port accessed.

12:30 PM Walk over to nuclear medicine department, have dye injected, walk back to AIC.

1:15 PM Get zometa (takes about an hour). Have port de-accessed. Hopefully I will get lunch in here somewhere.

2:30 PM Walk back over to nuclear medicine for bone scan. Cover eyes with eye mask and listen to iPod while on scanner bed.

3:30 PM Head home, crash.

Sounds lovely, doesn't it? Almost a whole day spent in medical procedures. Thank goodness I have a good book to read, an iPod to listen to favorite music, and patience. That last is the most important of all.

I get the bone scan results next week and promise to post the news as soon as I get hard information.

Last night we hosted the friends who gave me a copy of Julia Child's Mastering the Art of French Cooking (both volumes). In their honor, I served an (almost) entirely Julia meal:

Challah they brought from Seattle's Macrina BakeryPotage Parmentier (potato-leek soup)Epinards a la Mornay, gratines (creamed spinach with cheese sauce)Chou-fleur roti a la gratine (roasted cauliflower with buttered breadcrumbs)Mujadderah (Lentils and rice with caramelized onions and sour cream is the not-Julia dish, but I love it and this is the time of year to serve it. It's what Jacob served to Esau when E was so hungry he gave away his birthright for some pottage.)Plenty of wine for me and grape juice for our friendsAnd for dessert, Les Croquets Denison (little walnut-almond cakes with French vanilla ice cream)

It was a delicious meal if I say so myself. Everyone had two helpings of cauliflower and spinach!

And I love serving Shabbat dinner the day after thanksgiving that doesn't even come close to reminding us of turkey leftovers.

November 26, 2009

Ever since I was a little girl, I have watched the Macy's Thanksgiving parade on television. The Radio City Music Hall Rockettes are my favorite part. I wanted to be a Rockette, but the minimum height is 5'7", and I never got taller than 5'5". Watching them do precision high kicks every year may be the reason I love dance.

It took me a few years to convince Rik that this was a ritual worth continuing. Even if he ignores me, I follow the Cohen family custom of shouting for company when the Broadway shows come on, the Rockettes, a particularly good marching band, or a favorite balloon (I loved Underdog as a kid).

These days the Broadway shows and the Rockettes are on at the beginning of the parade, so I can watch for an hour and then start the cooking.

Ah, cooking. It's just not the same when we go to Thanksgiving dinner at someone else's house, even if I bring something yummy. Every so often there is a year we do not host, so I have developed a new ritual: I cook some turkey parts at home so that the house smells like roast turkey and we have leftovers for the next day.

Yesterday I baked chef Kevin Davis' Theo chocolate pecan pie. I made it last year from a recipe printed in the newspaper and learned that the cooking times had been printed incorrectly. After the holiday, I called the paper, they called the chef, and he solved the mystery. It's a most unusual pie, baked in a springform pan with tall sides and uses a full pound of butter in the crust. But you only have one piece....

Today, after watching the Rockettes, I will bake an apple pie, roast the turkey drumsticks, and my Thanksgiving rituals will be complete. Then it's off to the most important part -- being with friends who are like family.

Maybe someday I will achieve a lifelong dream of being in the crowd in New York City on Thanksgiving Day and seeing the Rockettes in person.

November 24, 2009

The Megace is doled out to me in 100 mg/ml liquid form, in small bottles. It can be hard to predict how long the last few doses will last. So when it looks like I have only some drops left, I call for a refill or in yesterday's case, a new prescription.

The first time I did this, the pharmacy told me they don't normally stock this medication and it would take a day or so to order it from another location. Now that I have been on it for a few months, I guess they are stocking it. I called the doctor's office and they said they would call in a new scrip for me.

I just called the pharmacy and my medication is ready to be picked up.

Yay that I don't have to miss a day's dose.

Boo that I had to call the nurse twice to remind her to call in the scrip.

Yay that this pharmacy learned to keep a new medication on hand now that they have a regular client taking it.

Yay that I don't have to miss a dose and learn the hard way if it would have an adverse effect.

November 20, 2009

It's been all over the news, the recent recommendation that women between the ages of 40 and 50 no longer need to have a mammogram, and women over 50 can have one every other year instead of every year. Plus there is now a recommendation that women no longer need to perform monthly breast self-exams (BSE). It's too stressful.

Oy.

I had a baseline mammogram at age 35 just in case (on my doctor's recommendation). At age 39 I found a tumor through BSE. It was confirmed by mammography and needle biopsy to be malignant and I entered the world of breast cancer.

Was I nervous about the baseline mammo? Yes. And about the tumor I could feel, about the follow up mammogram, the needle biopsy, and the three-day wait for results.

Was I glad to have had the testing anyway? You bet! Because I wasn't even old enough at 39 to begin having mammograms. But I got cancer anyway.

Several of my younger friends who were diagnosed with breast cancer had difficulty getting their doctors to believe that they had found a lump, or a suspicious rash, and needed follow up diagnosis and care. Many of them are now dead, because breast cancer in younger women can be more aggressive than in older women.

So here are my feelings about these recommendations:

1. I hope that the insurance companies don't view this as a reason to no longer fund mammography in women who fall outside the age criteria.

2. I still recommend to my mother, my sister and my friends that they have annual mammograms. Because mammography catches breast cancer earlier, when it is more easily treatable.

4. For anyone who doesn't know what to do, I say: Talk to your doctor. Ask her what she recommends. Discuss the new guidelines in detail with him. And make a health care decision based on your medical needs, not the potential stress that other women might feel.

November 19, 2009

It's a typical Seattle November -- cool if not outright cold, rainy, grey, overcast, windy. It's hard to go outdoors when the weather is so miserable, so I have been trying to focus on in-home tasks since my family left on Monday. (Of course, the fact that I was a little pooped from the birthday party and everyone's visit may have something to do with not wanting to run around!)

I have gone through all the party photos, ordered prints from Costco, rearranged the scrapbook. Stacked up the ironing but haven't actually done it yet -- maybe later today. Swept the leaves and outdoor yuck from the floors. (I swear, the dogs bring in more every day.) Did a load of dishes and laundry.

I have a good book to cuddle up with, but I also have a meeting to attend later this morning. At least by the time I get to the book the dogs will have dried off from their morning walk (Pumpkin got soaked). It's much more pleasant to cuddle with dry dogs than wet, stinky ones.

And that's my plan for today. The best part about living with cancer can be the freedom to do nothing if it so moves me.

November 15, 2009

The second part of the big 50th birthday celebration was an (adults only) birthday party. A catered dinner, a special cocktail, the closest of friends and family all combined to make for a memorable evening.

Rik greeted everyone at the door and offered a glass of something festive - beer, wine, sparkling water or a special pomegranate martini. The caterers passed hot onion tartlets and olive tapenade on baguettes. A. handed me a tiara to wear, complete with sparkly purple rhinestones. People had the opportunity to write a favorite lyric from a musical into a special scrapbook to which I will add photos from the party.

We enjoyed a fabulous dinner catered by the Madison Park Cafe:Spinach salad with goat cheese and pearsMarinated salmon on skewersGreen beansFarro with sauteed vegetablesSliced baguette and butter

I think the highlight of the program was the singing of Ladarke with friends from Balkanarama, Radost and Dunava. What a rush! We haven't sung it together in years. And the kazoos were a nice substitute for a tamburitsa orchestra.

Of course, another highlight was the video slide show Rik created. And the toasts by my mother, sister and husband. And the roasting from dear friends C and D. Who could choose?

Dessert was prepared by good friends and featured lots of vitamin CH (chocolate).

We ended the evening with more dancing, carrying on and happy talk. All in all it was the perfect birthday party, just the way I imagined it, down to the last detail.

As part of the great 50th birthday celebration, I asked for an aliyah, to be called to the Torah at Shabbat morning services. The rabbi made a special blessing for my continued good health and leadership to our synagogue community. Later on I led the congregation in the musaf service. It was so wonderful to have my mother, sister and brother in law, and Rik's parents there to celebrate with us. I felt sneakily good about saving a whole row of seats and then being able to say, "My whole family is coming."

After shul we all came back to the house for coffee and cake and a chance to shmooze a bit. Once everyone had left I tried to nap but it just didn't happen. I must be so keyed up that my family is here that I simply couldn't sleep!

For dinner we went to Rover's, a wonderful French restaurant that I have wanted to try for years. When he was at Washington MIddle School, Rik taught the children of "the chef in the hat," Thierry Ratureau. We were greeted warmly by the staff and offered champagne, compliments of the chef and his wife. It was a lovely start to a perfectly exquisite meal. (And clearly it paid to mention the WMS connection when making the reservation!)

Here is what we ate, a special tasting menu in honor of Julia Child:

Amuse Bouche of fennel soup, sardines with harissa and fromage de tete (which is not cheese but made from meat pieces from the head of a calf, in aspic and seasoned carefully. I ate it but neglected to ask what animal it came from. It was delicious.)Salade Lyonnaise with frisee lettuce, poached egg, bacon, garlic crouton and red wine vinaigrette (I asked for mine to be served without the bacon.)Soupe a l'Oignon with baguette and comte cheeseBoeuf Bourguignon (beef stew) with red wine, pearl onion, carrot and mushroomSouffle au Chocolate served with rum creme anglaise

It was a wonderfully decadent meal, served professionally and spiced with lively conversation. We were seated in a private area and felt that we had the undivided attention of the staff. I can heartily recommend Rover's for your next special occasion.

November 12, 2009

In a few days I am going to turn 50 years old. After my mets diagnosis, this is an age I wasn't sure I would I would see, much less get to celebrate with family and friends.

Originally after my mets diagnosis I just wanted to outlive the predictions, which said half the women diagnosed with mets lived one year. That was seven years ago, and I confess I am glad to have outlived the prediction from that time and no longer even want to know what the current data suggest. Every day after that first year has been a gift. That's why I celebrate my "metsiversary" every year.

It also was never a goal of mine to reach the age of 50. I did have goals at first: to dance at my niece's bat mitzvah; to travel to places old and new in other parts of the world; to buy a house and make it a home. (I also had a goal to raise children, but the cancer prevented that from happening.) I am glad to have achieved all of these goals. I am glad to have been well enough to achieve all of them. And I am even happier that I continue to feel well enough to set new goals.

For now, it's enough to spend time with family and enjoy the celebration. I am going to be 50, despite the cancer I have no grey hair, and I look and feel pretty terrific. As we say on Passover -- dayenu -- it will be enough.

November 10, 2009

Yesterday I had my monthly appointment with Dr. G. He still says it's time to change therapies as my tumor marker CA 27.29 continues to rise. But the newish breast tumors have shrunk slightly and I am not symptomatic of anything else. So we are planning a bone scan to see if there is any other cancer activity in my body.

I managed to persuade him to consider trying Femara (letrozole) again, the first estrogen inhibitor I used, which I took for three years with good results. In the meanwhile he will do some more research on Avastin (bevacizumab). We both agree that we should put off chemo as long as possible, given my body's hyper-sensitive reactions last spring to the 5FU.

November 09, 2009

My hand continues to improve somewhat. I have been sleeping without bandaging for about a week. Today I have been able to be without the glove until now, about 3 PM. I also saw the oncologist hits morning and he asked about the lymphedema. He thinks that the improvement in the lymphedema is my cancer not being as active. Huh.

I called the compression garment provider, Mary Catherine's and Daughters, to see if they had a second over-the-counter glove for me. (In May, they forgot to tell me the second glove had arrived and the owner brought it to me while I was in the hospital.) It turns out that they only order a certain number of garments in any given week, and so my sleeves and second glove will likely not arrive until the end of the week of Thanksgiving. I don't know why they have this policy, especially since my insurance company has already authorized payment for the garments. So I have another few weeks to wear the old sleeves and hope they are giving me enough compression. At least they told me they have already ordered the garments. Granted, the sleeves are custom made in Germany, so I knew it would take a few weeks, but the glove? It's an OTC item.

If I hadn't already given them my business, I might be tempted to go to another provider. But at this point it would be more effort to cancel the authorization request and get a new one for a different provider. But I am not impressed with this kind of customer service.

November 05, 2009

I think my hand may be beginning to improve. If you remember, I slept without the bandaging one night last week(?) and then felt I hadn't gotten enough support without the wrapping. Last night after a long day and a hard choir rehearsal, I felt I needed to get some fresh air on my skin so decided not to bandage before bed. This morning my hand seems okay. I am actually not wearing the glove yet and it's already 11 AM.

Could this be an indicator that things are beginning to return to normal? If I can alternate sleeping bandaged and unwrapped, if I don't have to wear the glove all day long but only most or even part of the day, if the new sleeves arrive quickly, maybe my hand and arm will be on the way to normal. The old normal, not a new normal, I hope.

Of course, every time I sleep unwrapped I don't take any ativan and then I get a little rebound insomnia, but what can you do? It's still more comfortable to lie awake in bed unwrapped than to bandage and try to sleep uncomfortably on drugs.

November 03, 2009

We've had a couple of sunny days in Seattle lately. The mornings at least are bright and I love walking the dogs to get my daily dose of (external) vitamin D. Sadly I then focus on household stuff, errands etc. and haven't taken advantage of the less wet grass to continue to put the garden to bed. The strawberries still need to be weeded and mulched, the front beds are weedy and two of the raised beds could use a tarp cover since I didn't plant a cover crop in them.

On the plus side, Rik has been really good about yard work. He rescued the rest of the green tomatoes, which we hung over the kitchen window and are slowly ripening in the indoors heat. Not as tasty as summer-ripened fruit but a definite improvement over what's in the grocery stores now. I just don't eat tomatoes in the winter. Store tomatoes taste like cardboard.

The local farmers' market has closed for the season and I missed the last few Thursday shopping sessions. It's back to apples, pears and bananas for fruit and on to eating squash, greens and potatoes for veggies. The dogs love the canned pumpkin I've added to their diet to add bulk while they lose weight. They think the canned green beans are okay, but they LOVE the canned pumpkin. Did you know canned pumpkin is a seasonal item? I will have to stock my pantry up.

November 02, 2009

My arm felt uncomfortable in the sleeve by late afternoon yesterday, so I am afraid I spoke too soon about no longer bandaging. I wrapped my arm again last night, perhaps a little too tight since I was worried about the after-effects of the night before. Things seem more normal today (at least, "normal" for the past eight weeks).

Wrapping too tight happens infrequently but when it does - ow! Fabric rubs against skin and leaves red marks (dangerous when you have lymphedema, can cause infection if they open). The finger wraps on my fourth finger were too tight last night and I felt as though the circulation was being cut off in my hand because of it.

I will adjust as I return to wrapping every night until I get the special, made-to-order new sleeves in a few weeks. And even taking ativan again didn't help me get better sleep with the bandaging too snug for comfort.

I gave myself a night without bandaging last night. My arm was stable when measured for a new sleeve last week, and I thought it was time to get off the ativan as well. As an anti-anxiety and sleep aid it's great, but when you take it every night for eight weeks, it becomes habituating.

After eight weeks of this craziness, I am so tired of sweating into the glove, feeling like my skin didn't breathe, and not being able to relax my hand.

I had the usual rebound insomnia after stopping the ativan and tossed and turned every hour all night long. I guess I got about three hours' sleep all together, and I predict a nap will be in my future this afternoon.

But this morning my arm seemed fine. Time will tell whether that is really the case and if I need to wrap again. I hope not, but you never know. One night without bandaging might set everything back again. However, I think it was a risk worth taking.